He should not drive already, gets lost. He's very frustrated, so we are expecting him to go down more soon; can't read, only watches tv but wants to go to store all the time. We are wondering about what is to come, bathroom is to be restored, should we put in certain toilets, showers, etc.? Appreciate any input.
Dementia is progressive and she will need outside help soon.
Ask her to reconsider the idea of a house.
Stay in the home you're in unless it's so huge and a money pit to keep up. If that's the case, then, go to a small rancher in an over-55 community and try it out. But, in the long run, your spouse will need a ton of care and he'll most likely have to transition to a care facility. Terrible situation. I can understand where you are completely. I AM there and my home is massive with too much upkeep, but, the alternative is going to an over-55 (not) or retirement community where it's a 5-6 yr. waitlist for a small apartment! Nuts!
He will get worse, much worse and if it were me I would consider placing him nearby, she can visit him daily if she likes, but she will still have a life.
Best of luck to her.
A rancher is always best I think. Make sure the bathroom he uses has the proper bars. A shower bench and a hand held shower. A shower that is easy in and out. No way for him to be able to get out of the house. Sell the car he drives before the move. My GFs Mom and Dad shared a car. So she sold it and bought a new only she could drive. He lost his wallet. She told him without his license he could not drive. He excepted that. When she found the wallet, she hid it and his keys. He never asked to drive again.
Sorry, but the fact is that the caregiving soon may no longer be possible as in home without taking the spouse before her loved one. Just too much to ask of anyone of a certain age unless she can afford a whole lot of in home help, and that's just not always financially feasible.
I am so glad she'll be near you as she'll need a lot of support and advice. She knows her hubby and his capablilities, so as far as that goes she will be a much better judge than we are.
Because he doesn't have a working memory he's going to struggle with any move. Basically every new location and every person is going to seem unfamiliar to him for a while, because he can't remember them, and he'll need time to develop a routine. You can imagine how confused he'll be on a day to day basis, and so it's not unusual with a move to see some worsening of the disease as they adjust. Because the disease progresses, some people may never return to a pre-move baseline.
Caregiving for Alzheimer's is hard. Her move neeeds to be made with a plan in place that allows her the most opportunities to take advantages of services and respite breaks.
If she can find one that is "Handicap accessible" or of "Universal design" that would be great.
But look for a house with few if any stairs. So Ranch home or a home with a main Bedroom on the first floor. Or room that could be made into a bedroom later, but it should have access to a good size bathroom.
Bathroom should have walk in shower, Roll in or Zero entry shower would be best.
Wide hallways.
Wider doorways. Or there are "Wide throw or Swing Clear hinges that allow a door to fully open. It gives a few more inches of clearance when the door is open.
If possible the ability to easily put a ramp in the garage if there are steps into the house from the garage. (It will reduce the 2 car garage to a 1 1/2 car garage and a 1 1/2 car garage might be a bit tight. )
If there are steps into the house front and back a ramp there might help as well.
If he is at risk of "escaping" think about placing a gate at any porch or deck steps. And make sure there is a latch that you can place a lock on.
I would also make sure the yard is fenced and the gates can be locked for the same reason.
This is one of the most active-living places I've ever seen, and it's wonderful that if one partner needs the handicap features in the home, they're already there, and the active partner doesn't have to worry about having them installed. Also, she (it's usually a she) has a support group around her, and she can continue to play pickleball, board games, and go hiking while her husband is at home with his caregiver. There's a lot of that.
Anyone who sees what's coming down the road on the spousal dementia highway is well advised to find a place like this if at all possible. It's not cheap, but there is peace of mind. It's doable for many people. They sell their big houses elsewhere, buy in and never look back. I've never heard one person complain that they missed the Hummel figurines that they had to sell to do it.
With him being bad enough to get lost where he lives, he should NOT be driving. Advise your sister to disable his car so he can not drive anymore. Before he kills someone.
We're currently remodeling a single story house that's been torn out to the studs. We're only in our very early 60s and in perfectly fine health, but we're remodeling it to grow old in it. That means a
6' x 6' curbless shower with handheld sprayer, blocking between the studs anywhere there may be grab bars in the future (all toilets, showers in both bathrooms), toilet with bidet in the master bathroom, and ADA compliant doorways with minimum 32" openings. The house also has no stairs whatsoever to get in or out. There are other projects as well, including a new kitchen.
It took four months just to get the permits, and there have been numerous unforseen delays in the whole project. If we're lucky, we'll be able to move in February.
We submitted the plans to the city for permits on December 20, 2022. Today is December 17, 2023.
This has been a long and extremely stressful project, but we're fortunate to still be living in our current house until this new one is finished. The budget has almost doubled, too.
Needless to say, I'd only recommend such an undertaking for the healthiest and most patient people, and even then this has solely tried both.
The subject of consideration for a safe and friendly home for the elderly, especially those suffering from dementia is complex and involved. Pages 81-100 of my book, Dementia Care Companion available on Amazon deals with this important subject and it is too long for me to copy paste it here.
I have copied a small preamble to this section here for you:
The home environment can be a source of major hazards for a person living with dementia. Stairs and uneven surfaces, toilets and bathrooms, kitchen appliances and stoves, inadequate lighting, small rugs, slippery surfaces, children’s toys, clutter, and so on represent potential hazards, chief among them, the risk of falls and fractures.
Early in the course of dementia, survey your home for safety and patient comfort. Group home-improvement tasks into coherent sets, and tend to them in order so by the time care needs grow to a particular level, the required amenities are in place.
Is Sis hoping that you will help out?
If your sister buys, it's work. If she rents at least, she can spend her time with him and call the landlord when the plumbing needs fixing, or the snow hasn't been shoveled. Suggest she get POA immediately, sell his car, take away the keys until it is sold - I had to. Watch him like a hawk and secure doors where it would be dangerous for him to go alone.
In the meantime, I have developed medical issues and again, am glad I didn't buy. At least I won't have to deal with a house alone when the time comes. And my own needs are important to keep in mind as I move forward. No one can predict the future. Your sister needs to do the thinking for both of them and think of herself where the future is concerned. As others have said, any move will be a problem for him. She needs to consider her own future and needs also.
I send my best wishes for her - and you - as these difficult decisions are being considered and made.